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Life with Alzheimer's patient like repeatedly being robbed

Alzheimer’s. Given that we were in the neurologist’s office at my request, I should not have been surprised — no, not surprised, but floored, shocked! — by the diagnosis. But I was.

That visit to the doctor was the result of a cluster of seemingly small incidents. First, my husband was just about to go out the door when I noticed that he was wearing one black shoe and one brown one. I thought, Well, if the closet is not well lit, anyone can make that mistake, so it was not a major concern. However, as he had the elegance of Fred Astaire, a fair degree of vanity and managed to look like a fashion plate even in fishing clothes, it was a bit troubling. But we laughed and made a joke of it, and he changed to a matching pair.

Joan Sutton cared for her husband Oscar Straus as he battled Alzheimer's. She describes those seven years between Straus's diagnosis and death in ther book The Alzheimer's Diary: One woman's experience from caregiver to widow

The next incident was more worrisome. When we were home I made breakfast and dinner, he prepared lunch. But one day, there was no lunch and, when I asked if we were going out to eat, he replied that he had already eaten, that he’d had lunch with John L. As John L. had been dead for several years, I was thrown, but I didn’t say anything — I just made sandwiches for both of us. He ate his and, later in the day, came to me and said, “I think I did something foolish earlier today.” I hugged him and told him that it was not foolish to think so vividly of a beloved friend.

After that, I was more watchful.

Then the phone rang — it was the bank, advising me that we had a considerable overdraft. That was so unlike my Princeton economics–educated husband that it was clear something was very wrong.

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Soon we were at the neurologist’s office, where the doctor ordered a battery of tests. I was in the room with him when he took the cognitive ones, and I realized for the first time how dependent he had become on me. When asked a question, he looked to me for the answer. The doctor suggested that I sit behind him. When challenged to alphabetically list four-legged animals, he got to F and then came up not with a four-legged animal but a four-letter word. That was the beginning of his many attempts in the coming years to turn the subject away from what he could not do with a caustic remark or humour. Blood work and various scans followed the cognitive tests, and then I found myself standing in the doctor’s office, hearing those words: “early dementia, first-stage Alzheimer’s — AD.”

I didn’t believe it. I had a picture in my mind of the Alzheimer’s patient — looking angry and untidy, struggling to feed him- or herself, not recognizing people, wandering off mindlessly. My husband was not like that — not anything like that. Yes, there were troubling incidents, but he was getting older — surely his behaviour was just due to aging. And if not aging, then perhaps he’d had a small stroke or there was some manageable “Take this pill, and it will all go away” treatment. Please!

I failed to recognize that my mental portrait of the Alzheimer’s patient was of someone in the end stages. The first stages of the disease do not look anything like that, there are no visual clues. And so I began the doctor search. One, two, three — all concurred. And all the while, my husband was becoming more and more tired of the routine — dressing, undressing, being poked and prodded and asked to memorize, to remember several different items, to draw a clock.

At last, I faced the fact that I was doing this not for him but for myself. I wanted the answer to be different. Clearly, it would not be. Like it or not — and I didn’t — I had to accept the truth. And so my beloved husband became one of the 5 million Americans and 740,000 Canadians diagnosed with this thief of a disease.

One of the first things I learned was that the recorded number of those afflicted is grossly inaccurate. That’s only North America — the numbers affected worldwide are formidable. And even those statistics are deceiving, because for every individual diagnosed, a circle of others — partners, family, friends, employers and employees — are also victims, robbed of memory and relationships. Society now recognizes the caregivers and the heavy burden they bear. But others also pay the emotional, physical and financial prices: children who become parents to their parents, grandchildren deprived of that special relationship, partners who see years of intimacy vanish as if they never were. And society itself, robbed of all that brain power and burdened by the cost of care.

And so, in 1996, I began my seven-year journey, the passage of time that Nancy Reagan described as “the long good-bye.”

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I have come to think of Alzheimer’s Disease as a cat burglar — a stealthy thief with infinite patience. He doesn’t steal all your memory at once — he just slips in and takes a little bit here and a little bit there and then disappears for a while. You start to think you are safe. But back he comes, to take another piece of the precious self — and all that goes with it.

At the outset, the neurologists explained to me that my husband was in the early stage of Alzheimer’s. This, by the way, should not be confused with early-onset Alzheimer’s. The latter is a fairly rare type that attacks people under the age of 65.

Two doctors told me he had lost “executive function,” which sounded to me like gobbledygook doctor-speak — my husband was not in the running to become the CEO of a company. But the third doctor explained the situation better. He said that my husband had lost “the memory of procedure.”

That explained why he could no longer write a cheque or balance the chequebook. Well, that’s not so bad. I can do that, I thought. After all, I had handled my own finances before our marriage. This situation was a little more complicated and somewhat delicate. But it was doable and not the end of the world — for me.

But I wondered, What about him? And I asked myself, not for the last time, “What, if anything, does my husband know, think about this?” He had been in charge of our finances, spent time every day at his desk, read the business pages, and managed his own investments. Was he aware that he was no longer capable of these responsibilities? Did it bother him? Did he hate losing this control? He saw me with the chequebook, and he said nothing. I wondered, In taking over, am I hurting his feelings? Diminishing him? How do I navigate in this world of Alzheimer’s?

This definition also explained what had taken place in the kitchen. My husband had always been passionate about food. When we first married, I would do all the shopping and meal planning during the week, thinking that such a busy man shouldn’t have to worry about groceries on the weekend. Wrong — he wanted to be in the fish market, in the cheese store, at the vegetable stand. Over the years, food became a large part of our marriage. We planned menus together, shopped together, cooked together, critiqued together and tasted food and wine together. It was more than cooking — it was fun and laughter; it was sensual.

Now this man who’d prepared a perfect rack of lamb persillé (carving it in the French manner), whipped up a cheese soufflé (his whisk beating out a samba), never used a bottle dressing and browned adroitly the crust on the crème brûlée, stood looking at the bread, lettuce, meat and mustard and did not know what to do. He could not assemble a sandwich.

His face showed frustration, anger, and then embarrassment. He walked away, saying he was not hungry. I vowed that I would never let him be in a position again where he was face to face with something he could not do. I would be the protector of his dignity. But that became a delicate dance, as I balanced encouraging him to participate against the possibility of him believing that he had failed. His limitations were not failures — the word failure was not in our vocabulary.

Of course, I could do all the cooking — that would not be a hardship. Millions of partners just assume that they will do it. But it was not the need to take on that task that angered me. It was the loss of what that meant to us. A large part of our days revolved around food. What would fill that time now? At first, I tried to involve him. When I was making a stew, I asked him to sit in the kitchen with me, where I gave him the task of cutting the meat into small pieces. He stayed with it for a few minutes and then, again, walked away. This part of our life together was clearly over.

Alzheimer’s had now stolen two pieces of my husband’s self — his ability to manage his finances and his joy in cooking — and, with those, a large part of his dignity. And this thief had robbed me too — of companionship, laughter and what our friends used to call our ballet in the kitchen.

Something like this happens when Alzheimer’s becomes part of any relationship. Whether it is golf, gardening, backyard barbecues or fights over the remote, Alzheimer’s steals something precious — not just from one life but from two.

Once the unheralded and forgotten group, caregivers are now the subject of a cottage industry of advice. It pours at us in blogs, articles and books. Some say that you must enter the Alzheimer’s world completely, forget all other aspects of self and become totally the caregiver, and others tell you that since the patient is “out of it,” you might as well get on with your life.

I was too selfish to do the former and too much in love to believe the latter, so I bumbled along, taking each day as it came.

The most amusing advice that I received — over and over from assorted voices — was that I should see a therapist. What, I wondered, did these people see when they looked at me? Did I look terribly stressed? Was this suggestion a way of distancing themselves? Were they afraid I might unload my concerns on them? Or were they like so many in our society who think that every hardball life throws is something that should be taken to a therapist — that life should be happy, that there should be no downside? By all means, let’s exorcise sadness from the lifecycle.

“It must be depressing,” these people would say. Well, I was certainly sometimes sad, but I was not depressed. I draw a distinction between the two. Depression is a serious, debilitating, life-destroying illness that needs to be recognized, understood and treated. But sadness is simply a part of life. During our lifetimes, we will all meet events, situations and diagnoses that will make us sad. What kind of person would I be if watching what was happening to my husband did not make me sad? And every day was not filled with sadness. There were still hugs and moments of laughter.

Finally, though, I did listen to the voices, and I went to a therapist twice. This is why I would never make it as a politician — talking about myself and probing my various nerve ends for 50 minutes straight bores me to death. I was brought up in the Scots-Irish way — just get on with what you need to do. My credo is a version of the alcoholic’s prayer — if you can change it, do so, if you can’t, then so be it. Or as Winston Churchill is supposed to have said, “KBO”— keep buggering on.

Well, if talking to a therapist didn’t help, why not a support group? I found online support groups to be a tremendous help. I could turn to them anytime — in the middle of the night if necessary — and skim through the various postings to find the ones that described situations similar to mine. I suspect that taking care of a parent is different in many ways from taking care of a spouse, so I looked for the experiences of other partners. Those postings provided me with a great learning lifeline.

But I did not personally attend a support group until a few months before my husband died. By that time, the caregiving was so intense that I needed the physical presence of other caregivers, the special understanding and comfort of group support. Until that point, when I did have some time to myself, I wanted to get away from the Alzheimer’s world, to be with a friend and talk about books, politics and the theatre and catch up on the doings of other friends (yes, you may call that gossip!) — anything but Alzheimer’s.

So I offer no advice. Each caregiver must find his or her own way. But I will share some things that have worked for me. Kitty Carlisle Hart once told me that she began every day by looking in the mirror and saying to her reflection, “I forgive you.” That is not a bad way for any of us to start our days. I did that and I added to that plea, “Please give me the patience I need.”

For me, patience was the hardest part of this role. I had always moved quickly, made decisions fast (sometimes too fast) and been prone to skip the small talk and get to the point. Ironically, I was married to a man who moved, thought and acted even more quickly than I did. Once, when he suggested we go for a walk, my answer would always be “Yes, if I don’t have to run.” Now his brain processed everything slowly, if at all, and he had become so physically frail that moving from A to B was a major effort.

So I started my day by forgiving myself for yesterday’s impatience and praying for patience throughout the new one. May both be yours.

Excerpted from The Alzheimer's Diary: One Woman's Experience From Caregiver to Widow by Joan Sutton. Copyright (c) 2014 by Joan Sutton. Excerpted with permission of the author. All profits from the sale of this book will benefit The Alzheimer's Drug Discovery Foundation/Canada. Joan Sutton is a journalist who has previously written for the Toronto Star and the Toronto Sun.

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